The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)

Recruiting

• Conditions: Oncologic Disorders

• Registration Number: NCT06229535
• Lead Sponsor: Centro di Riferimento Oncologico - Aviano

Brief Summary

Cancer survivors experience a form of social discrimination that is described in numerous areas such as private life, educational and work paths and the achievement of personal goals. Starting from this scenario, more and more national legislative initiatives are emerging to reconcognize the right to be forgotten, defined as the right not to have to report one's, resolved, oncological disease in contact with institutions such as insurance companies, banks or others. The issue of the right to be forgotten is current and new, primarily in the AYA (adolescents and young adults) population. The purpose of this study is to explore and describe the experience of adolescents and young adults affected by previous oncological disease with respect to the issue of the right to be forgotten. In particular, focusing on:

* awareness (knowledge of the issue);

* significance attributed and subjective perception;

* implications/fallouts perceived or experienced on one's present and future history.

Detailed Description

Cancer survivors experience a form of social discrimination that is described in numerous areas such as private life, educational and work paths and the achievement of personal goals. Starting from this scenario, more and more national legislative initiatives are emerging to reconcognize the right to be forgotten, defined as the right not to have to report one's, resolved, oncological disease in contact with institutions such as insurance companies, banks or others. The issue of the right to be forgotten is current and new, primarily in the AYA (adolescents and young adults) population. The purpose of this study is to explore and describe the experience of adolescents and young adults affected by previous oncological disease with respect to the issue of the right to be forgotten. In particular, focusing on:

* awareness (knowledge of the issue);

* significance attributed and subjective perception;

* implications/fallouts perceived or experienced on one's present and future history.

Study Timeline

• Study Start: 2023-11-16
• Study First Submitted: 2023-12-12
• Status Verified: 2024-01
• Study First Submitted QC: 2024-01-19
• Last Update Submitted: 2024-01-19
• Study First Posted: 2024-01-29
• Last Update Posted: 2024-01-29
• Primary Completion: 2024-11-16
• Study Completion: 2024-11-16

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 60

Inclusion Criteria

• Age at diagnosis between (or equal to) 15 and 39 years;
• patients not in active phase of treatment;
• at least 5 years elapsed since diagnosis;
• comprehension and written expressive ability of the Italian language.
• subscription informed consent to the study.

Exclusion Criteria

NA

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Frequency of participants citing words attributable to the thematic area that delineate the architecture of the text about meaning and subjective perception of the right to be forgotten.	up to 1 year	Frequency of participants citing words attributable to the thematic area that delineate the architecture of the text about meaning and subjective perception of the right to be forgotten.
Frequency of participants citing words attributable to the topic of awareness in the text with the aim to explore the experience of adolescents and young adults with prior cancer with respect to the issue of the right to be forgotten.	up to 1 year	Frequency with which words attributable to the topic of awareness are expressed in the text
Frequency of participants citing words attributable to implications/implications perceived or experienced on one's present and future history with respect to the issue of the right to be forgotten.	up to 1 year	Frequency of participants citing words attributable to implications/implications perceived or experienced on one's present and future history with respect to the issue of the right to be forgotten.

Secondary Outcome Measures

Name	Time	Method
Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population	up to 1 year	Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population measured through indicators that identify this argumentative junction in the text

Trial Locations

Locations (9)

Università degli studi di Milano - Bicocca; 🇮🇹 Monza, Italy

IRCCS, Ospedale Bambino Gesù; 🇮🇹 Roma, Italy

Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS; 🇮🇹 Aviano, Pordenone, Italy

Fondazione IRCCS Istituto Nazionale Tumori; 🇮🇹 Milano, Italy

Università di Palermo; 🇮🇹 Palermo, Italy

Istituto Europeo di Oncologia IRCCS; 🇮🇹 Milano, Italy

Ospedale Regina Margherita; 🇮🇹 Torino, Italy

IRCCS Ospedale Policlinico San Martino; 🇮🇹 Genova, Italy

Azienda Ospedaliero-Universitaria di Modena; 🇮🇹 Modena, Italy